MOEBIIUS SYNDROME IN THE NEWS
Hey, we're back after a couple of days off...and we return to read about one of our newest Moebius heroes:  young Preston Tassi and his family, from Des Moines, Iowa.  Preston's parents hope to be able to have their son undergo the smile surgery.  But it's not going to be easy to make it happen.  Want to know what it can be like to be a mom or dad of a Moebius child?  Never heard of the smile surgery, or want to know more about it?  Read on:

A one-year-old whose face is paralyzed due to an extremely rare neurological condition is set to undergo groundbreaking surgery that will see him smile for the first time.
Preston Tassi from Des Moines, Iowa, is one of several thousand people worldwide who suffers from Moebius Syndrome, which means he cannot blink, look side-to-side or move his mouth.
However, doctors told KCCI.com that they are planning to treat his debilitating symptoms through a special procedure that will insert nerve and muscle tissue from his inner thigh into the jaw area.
Preston's parents are now desperately trying to raise the $100,000 needed for the operation, often referred to as smile or reanimation surgery, which will take place when he turns five.
Sarah Tassi said she and her husband, Jason first realized something was wrong shortly after Preston's birth on May 18, 2012.
While ultrasounds had not detected anything unusual, they were surprised to see that he only had one finger on his right hand.
Nurses were also concerned that he was breathing oddly and his eyes stayed wide open while he cried.
After doctors assessed the newborn's condition, Mr and Mrs Tassi were called in to meet with a neurologist. An MRI scan confirmed that Preston had Moebius Syndrome.
The incurable birth disorder prevents the cranial nerves around the brain from developing, resulting in an inability to move the eyes and face. In some cases it also impacts hearing.

'Just because someone may not smile on the outside, doesn't always mean they're not smiling on the inside'

 

Other indicators include clubbed feet, missing digits and breathing difficulties. It is thought to affect roughly two to 20 births in every one million and a 2007 study identified 2,000 cases globally.
Since birth Preston has been going to weekly physical therapy sessions, but to restore control of his lips and tongue surgical intervention will be needed. Mrs Tassi says that at the moment he is unable to eat unaided.
'As we feed him we have to hold his cheeks in,' she explained. On the flip side Preston's motor skills are on track with other children his age and he is almost ready to walk.
In a bid to raise the thousands of dollars needed for surgery the Tassis have moved back in with their parents and set up a website called smilesforpreston.com.
On their site they write: 'Preston is a remarkable little boy. Nothing is going to stand in his way. And we hope that sharing our story (his story), it will raise more awareness for others with this very rare syndrome.
'And for others to realize you can't always judge a book by it's cover. Just because someone may not smile on the outside... doesn't always mean they're not smiling on the inside.'
Dr Nate Noble, Preston's doctor at Blank Children's Hospital, says his case will help professionals to better understand Moebius syndrome.
Despite the challenges they have faced as new parents, Mr Tassi added: 'We just feel blessed to have him in our lives. Every second of it.'


Amen.  Be sure and go to the original link above for this story--there are some great pictures there of brave Preston and his family.  Best of luck to them.